Notes

Responding to Conor Friedersdorf’s essay “Will Editing Your Baby’s Genes Be Mandatory?” readers think through the ethical dilemmas foreshadowed by advances in biotechnology, starting with the question: If gene editing one day becomes a common medical treatment, should parents be punished for opting out?

As I wrote a few weeks ago, advances in biotechnology could make this a pressing question in the near future—and under certain conditions, this reader’s answer is yes:

My gut instinct is that I would lean towards punishment if the parents were to have the fetus tested for genetic abnormalities and diseases and the test came back positive, but the parents still refused to consider gene editing. It’s knowingly bringing preventable suffering into the world. If the attendant medical procedures were as cheap and safe as a course of antibiotics, would it be unethical to deny a potential human gene editing to avert a serious disease?

Yes, I believe so.

Another reader used a fanciful thought-experiment to reach a similar conclusion:

Let us imagine two prospective parents, set A, each carriers of the Tay-Sachs gene. They have a one-in-four chance of passing two copies of the gene onto a child. Doing so is a death sentence for the child by its eighth birthday.

Now imagine two other prospective parents, set B. These parents decide that on their child’s eighth birthday, they will sit with the child and several friends for a nice game of Russian roulette. The only difference between A and B is that with most handguns, B has given its child a slightly better chance of survival.

I use the graphic analogy to drive home the essential point: Parents who knowingly risk passing on bad genes to a child can cause real harm. They are gambling with the life of another human being. In any other context, such behavior would be instantly recognized as abuse and protective state intervention would be not only defensible but also obligatory. The fancy phrases about dignity and fundamental liberty and so forth are what Peter Singer called “the last resource of those who have run out of arguments.”

On the other hand, the next reader supports penalties for parents who refuse medical interventions, yet does not believe similar penalties will, or should, be applied to parents who refuse gene-editing:

It is my understanding that the majority, if not all, of the cases pursued against parents for not obtaining medical interventions for their children are in cases where there is a clear and immediate danger to the child’s life and health, along with a clear and immediate medical intervention for the child's condition. Such medical interventions must not only have a high probability of success, but also have a high probability of not causing secondary conditions worse than the treated disease or condition itself.

In all cases I can think of, gene editing is not and will not be like this. Gene editing is more like vaccination, and prosecutions of parents who refuse to vaccinate almost never occur. In some respects the case for prosecutions of anti–gene-editors would be even weaker than it is for “anti-vaxxers.”

Gene editing would likely not be an effort to prevent a clear and immediate harm, but would be a treatment for a probabilistic condition far in a person-not-even-born-yet’s future. Gene editing will involve trade-offs where preventing one condition might increase the chance where one will get another. It’s even possible that the first major case to try the merits of gene editing will be brought by a person(s) who has suffered as a consequence of a cosmetic intervention––as the genes related to high IQ seem to be the same responsible for some mental illnesses.

Unlike with vaccines, we won’t have decades of research to back up the fact that such interventions do not pose even larger long-term risks for society. Nor would the failure to make such interventions pose real risks (rather than real costs) on the larger society as it does when parents refuse to have their children vaccinated. Even then, we make exceptions for those who oppose vaccinations on religious grounds—as many of the Amish currently do.

The fight will likely be over the financial costs imposed by those who have refused to have their children’s genes edited, but that’s only one of a much broader set of health choices parents make and therefore just one component of a much larger debate. Hopefully it will occur through public education and incentives rather than throwing bio-conservative parents in jail.

Says another opponent of punishing parents:

I believe the aims of a legal system should be deterrence and reformation. The former is unlikely to work on people whose convictions are so strong as to deny the benefits of modern medical science in order to save the lives of their children. Meanwhile, reformation seems illegitimate in the context of forcing people to change their religious beliefs.

And still another opponent of punishment writes:

Actively causing harm is qualitatively different from passively allowing harm to take place. In the same way, there is a qualitative difference between allowing harm to occur to a living person, and potentially allowing harm to occur to a future person. Passively allowing harm to occur is often morally wrong; allowing potential harm to a future person may be wrong too. But there are degrees and levels of moral right and wrong, and these are simply less bad than active harm and non-potential harm.

We can make the world a better place, but not a perfect place. And I wouldn’t want to if I could. Perfection would be stagnation. As George Orwell said, “sainthood is … a thing that human beings must avoid.” It is admirable to seek out the problems of the future and seek to cure them, but to codify it as an obligation is a bridge too far.

Yet even if editing children’s genes isn’t legally mandated, this correspondent posits that the social pressure to do it will be very powerful:

There’s a sense today that a pregnant woman should pay special attention to her health. Take prenatal vitamins, visit with a doctor, refrain from drinking, don’t use drugs, etc. I think that in time, gene editing, or some form of gene screening, will come to be seen similarly to the measures listed above—regardless of efficacy.

I don’t know if we’ll punish people who decline gene editing legally. But we sure as hell will socially (for better or worse), and that’ll eventually go on to influence legal measures. I’m of the opinion that access to these procedures should be a “right” once we sufficiently verify them—the potential to prevent suffering is too great to ignore or shy away from.

In the same vein, this reader suggests increasing levels of social and even legal pressure are inevitable, and that this is as it should be:

Society has continuously raised the bar as to what is the acceptable standard of care of a child. We no longer legally permit our children to be neglected or starved to death. We don’t allow them to be used as cheap labor or permit them to be left uneducated. Laws require that they be cared for and treated medically. As time goes on and technology, laws, and social behaviors change, we demand that the previously acceptably level of misery be lowered.

It seems natural that when the required technology is available, we demand that parents not permit children to be born with preventable diseases and conditions that would cause suffering. We can, of course, look far into the future and imagine laws that we would consider to be unbearably intrusive as some sign that technology has usurped our basic human rights, but society will always seek to better itself. It seems natural to me that the future contains laws and expectations that look restrictive and unnecessary to a society that still gives birth to children doomed to die from painful and terrifying conditions, just as child labor laws, or even laws that prevent infanticide, must have seemed absurd to the societies of the past.

I am a strong advocate of abortion rights. I believe women have the right to conceive or not conceive and to abort a pregnancy for almost any reason. Somehow, the intuition which causes me to adopt that position doesn’t map to the context of genetic manipulation. I am entirely comfortable with laws which punish women and men for procreating negligently by failing to use genetic screening and manipulation. I could try to put a veneer on this and reconcile the two views, but I don’t think I can do so honestly. I wonder any of your liberal readers face the same dilemma?

If you have an answer for how to resolve those two views, let us know. This reader spells out the conflict:

In order to be pro-choice, one must hold to the supremacy of the mother’s rights vis-a-vis the fetus. The mother gets to decide what happens with her body, notwithstanding any moral claims we might contemplate assigning the fetus. In that case, it’s hard to see how a pro-choice person could, with ethical consistency, advocate the compulsion of a mother to undergo a procedure for the health of the fetus, which is certainly what gene editing would entail. The mother gets to decide what happens with her body, after all.

Of course, the pro-choice person could strike a balance between the rights of the mother and the rights of the fetus. Carrying a baby to term is such a gargantuan responsibility that a mother cannot fairly be compelled to do it. But gene-editing procedures, if they don’t pose health risks, would not be nearly as burdensome, and so a mother could be fairly compelled to undergo them. Many pro-choice people, however, would not be open to any kind of balancing of rights between a mother and a fetus.

Similarly, this reader believes any attempt to punish parents for declining to edit genes would be in irresolvable tension with a regime of legal abortion into the second trimester:

Forcing gene editing before viability would be untenable since an abortion could be performed if chosen by the mother, essentially rendering the idea moot. In fact, since the fetus is not viewed as a “baby or child” before 24 to 28 weeks, it would seem impossible under current law to legally require gene editing of a non-existent “baby or child.” So then the question becomes: Can we force gene editing after 24 to 28 weeks, when a fetus becomes viable? Of course, we would first have to prove gene editing at that stage of development would be effective and beneficial to the fetus/child/person (or perhaps to society), no small task.

And we would also have to consider if the same gene editing would be effective and beneficial after the birth of a baby. At that point, if parents refuse gene editing, a court could intervene and appoint a guardian if a judge determines that the best interests of the child (or society?) are not being met.

But if parents are punished for declining to genetically manipulate, another reader asks, isn’t the logical conclusion a legal regime where traditional procreation is criminalized?

The corollary to your point is that reproduction is also only allowed via medical intervention. Simply having sex and getting pregnant will not be acceptable. I honestly don’t see that. Natural sex is too ingrained in our makeup and is part of healthy relationships.

Will genetic-risk testing become mandatory? And what happens if a person becomes aware of a substantial chance of producing a child with a serious genetic disease even through voluntary genetic testing—are you also suggesting that these people be arrested if they decide to have natural sex and pregnancy occurs? That sounds like a police state to me.

But that is my point.

There is precedent here in adults with Down syndrome being allowed to marry and have children. There have been vigorous attempts to discourage this—some of which were clearly illegal, as the courts have found. Yes, those children may well have a higher chance of suffering the same problems, and there is a significant cost to the society in allowing it to happen. But is the cost to society worth the controls that would need to be created? And where do you draw the line? As soon as we go down that path, we inevitably get to the concept of who should be allowed to live and reproduce.

Another reader follows that path, fearing gene editing could lead to the targeting of gays:

Say in the future, science can determine with a reasonable degree of certainty whether a person’s gender identification matches their biological gender. Or say geneticists could identify someone who has a high probability of being homosexual.

Should or would we allow parents to abort or modify individuals who had these gene expressions, if their goal was to “eliminate” homosexuality or gender identification disorders? If that possibility existed, would the civil rights standing of homosexuals that they were born this way still be valid?

I believe the ability to edit the genome will make both political parties reevaluate their views on abortion, the absoluteness of science and a whole range of ethical questions that many think are currently settled. I find it scary. I could honestly see certain religions, or even the bulk of mothers/fathers, deciding to eliminate or modify a fetus they felt could be homosexual. How could society stop that?

A graduate student in public health and bioethics has misgivings about whether debating a future technology like gene editing is worthwhile:

All of these questions, in my opinion, become wasted energy, because we can’t even DO this yet. And none of them matter, because you haven’t addressed the much larger issue, which is WHO IS PAYING FOR THIS? And that question gets to the heart of why I’m responding to you, rather than working on the 35 pages of papers I need to be writing. Every time journalists and academics write on these topics, they are missing the larger social question: the logistical question of how this technology actually gets applied and who has access to it, particularly when you situate this issue in the current context of our reproductive political reality.

In that current reality, women don’t even have access to BASIC reproductive healthcare. Low-income women in states that didn't accept the ACA expansion don’t have access to contraception. Eighty-nine percent of counties in America are without abortion access. Trump just gave states permission to stop funding ANY women’s health-care clinic that provides abortion services—meaning that they will stop paying for pap tests, breast exams, STI testing, prenatal exams, and other cancer screenings. Women who are carrying fetuses with fatal anomalies can’t access abortions because insurance won’t cover it, and many states have banned abortion beyond 20 weeks without exception.

Reproductive access in America is already stratified. Many couples who know that they are at risk for bearing a child with a genetic disorder can’t afford to access PGD [Ed. note: pre-implantation genetic diagnosis, the method this reader and her partner considered] because many insurance plans don’t cover it. These technologies are only available to the well-insured or the well-off.

On that note, a nurse and medical-school student predicts that uneven access to gene-editing will stigmatize certain diseases, affecting their treatment:

Any prenatal gene editing technology is only possible in an IVF process. While theoretically this technology could be further developed to be implemented in vivo, this would need to occur very early after conception—close timing that would only be possible after a medically managed insemination. Since half of all pregnancies in the country are unplanned and many more are conceived naturally due to the higher cost, logistical barriers, and health risks of IVF, I find it very unlikely that gene editing will become the “norm.”

That said, this ability will add to the privilege of conceiving via IVF, which already allows families to screen egg and sperm donors as well as screen pre-implantation embryos for chromosomal abnormalities. Said another way, single-gene diseases such as muscular dystrophy, cystic fibrosis or sickle cell will soon be eliminated among the IVF population and thus will become a marker for disadvantage.

To have these diseases will signify that you were an accidental pregnancy or that your parents didn’t have the resources to perform IVF with screening. Thus the stigma that we attach to other preventable congenital differences, such as fetal alcohol syndrome, may be extended to genetic disorders that we currently consider to be “bad luck” and evenly distributed across the population. One can further imagine the impact of this stigma on care for these individuals, in everything from the adoption pool to special education or Medicaid funding to employment discrimination.

A Ph.D. student-researcher in an adjacent field sums up the concerns about equity:

A professor of mine liked to pose the following scenario to his undergraduates: Imagine that we develop a brain stimulator that improves memory and abstract reasoning and makes it easier for people to pick up knowledge-economy cognitive skills; in some important sense, it is a device that makes people “smarter.” Say it was on sale for a quarter million dollars, and though there will be some subsidies, the majority of devices will go to people who can pay.

The undergrads squirmed at this idea. Then the professor asked: Why did you choose to attend a four-year, private college? How is that different?

We are already technologizing, data-mining, and price-discriminating so many building blocks of a good life: education, fresh produce, fitness, matchmaking.

Access to preventive medical care is distributed unequally. Access to prenatal care is distributed unequally. If we build more precise tools for preventive and prenatal care, genetic or otherwise, those will be distributed unequally, too. I don’t have a clear answer as to whether parents should be punished for opting out, but if they are, universal compulsion would only make sense as the complement of universal access.

Of course we’ll tend towards a consensus that has too much of the former and not enough of the latter.

Our next group of correspondents stood out due to their vocations: In one way or another, their chosen careers brought them into the subculture of scientific thinking. These readers tended to be more favorably disposed to gene editing than others.

Take this reader, a “semi-retired school psychologist and a lover of science” whose daughter plans to become a clinical geneticist:

I agree with the premise of your article [that prophylactic gene editing could soon be mandatory] and am not frightened by it at all. Scientific advances have not, cannot, and should not be stopped. Since the first civilizations science has been dragging religion and society reluctantly along into a more technologically advanced future. What we gain from this seems always to be more than what we have lost.

A medical student who hopes one day to do gene editing was likewise eager for a future where it is used to cure disease––and even to direct the way that humans evolve:

Modern medicine, in its current form, is basically the answer to the question: “What is the best way to treat diseases whose cures cannot and will not ever be found?” Treating someone with cystic fibrosis, for instance, is an admirable thing to do, but it’s also an exercise in futility: That patient will undoubtedly die prematurely. Anything besides excising the mutant gene and replacing it with a normal copy is treading water and delaying the inevitable (though, obviously, the patients must still be treated).

In modern societies, infectious diseases and trauma are more or less under control (relative to developing countries and bygone eras). Curing genetic diseases (cancer loosely being included in this category) are currently a dead end. So, logically, addressing this head-on is the only next step.

I view gene therapy and editing as the way of the future, not only of medicine but also of humanity in general. It will start as the means for cures of currently incurable diseases. Eventually, it will be a means by which we can continue to evolve ourselves as a species. If 3.5 billion years of evolution churned our species out through the natural selection of random mutations, how much better can we do with logic and molecular precision? In my opinion, anything that can widely (and, potentially, permanently) change mankind and society for the better should be done.

I wish I shared the correspondent’s confidence that logic and molecular precision will serve humanity better in this realm than the decentralized systems of dating and mating have done so far. Reflecting on the decisions that literally every bygone generation might have made if able to edit genes, I fear that our choices will prove as imprudent in hindsight––and that’s not even accounting for unintended consequences.

The next reader is working to earn his Master’s degree in Biochemistry:

It is not unreasonable to imagine that in the near future gene editing will be a safe and effective means of preventing genetic diseases. It is also not unreasonable to imagine that in the case of many diseases, such as sickle-cell anemia or cystic fibrosis, which are caused by small mutations in a single gene coding for a functionally important protein, gene editing would be likely to prevent the disease without affecting the child in any other way. For these diseases, once it is demonstrated that gene editing works the way that it is supposed to, I think parents should be punished for failing to employ gene editing. I think that if it had been demonstrated that gene editing was safe, effective, and selective, refusal to use this technique to prevent disease would essentially amount to fear and mistrust of the scientific and medical communities. I really don’t think that’s a valid reason to allow another person to be afflicted by a preventable disease.

However, I draw a distinction here between expecting parents to make edits that will definitely prevent a debilitating disease, and expecting edits that reduce the risk of a disease that the child may or may not have ended up getting. I certainly wouldn’t be opposed to parents editing genes to reduce the chance of cancer, but I wouldn’t really expect it. There are a number of behaviors that we know reduce cancer risk which we don’t really expect parents to push on their kids. For example, parents could probably reduce cancer risk in their children by some small fraction by giving them grape juice every day or something like that. I don’t really expect parents to do that. If you can’t blame parents for not giving their kids grape juice you really can’t blame them for not editing the kid’s genome.

At the same time, he adds, “we can really only justify using gene editing for medical purposes”:

We are a long way from understanding our biology well enough to be able to make genome modifications to enhance intelligence or beauty or athleticism without risking horrible unforeseen side effects. But even if we did have the ability to do that, I still don’t think it would be justified because I don’t think we can tie these traits to an increased sense of happiness or fulfillment.

I am short and scrawny, and I’m perfectly happy with that. I know plenty of people who are perfectly content with being as dumb as rocks. I know plenty of smart people who are miserable. So, I’ll grant that I am basing my opinion here on a biased personal experience, but I really don’t think that we can say that it really is in the best interests of the child to alter superficial traits.

When discussing a child’s future, people often talk as if the parent’s preference is the most important thing. But parents don’t own their children. Parents are stewards of their children. I think that making “designer babies” would be an example of parents making self-serving decisions, rather than making decisions in the best interests of the child. I don’t think that is justifiable.

The next correspondent is a biochemistry grad student who works in a research group that specializes in genome-editing technology, and cautions against its near-term limits:

If gene therapy with Cas9 were at some future time as cheap, easy, and safe as an antibiotic treatment, then yes, I would support punishments for parents who forewent a cure for their children. In some cases, a genetic disorder is very similar to other macro-level disorders, e.g. genes can be broken in the same sense that a wrist is broken. While wrists can come in many healthy shapes and sizes and colors, “broken in two” is not one of them; likewise, while genetic diversity is important and natural and can’t always be cleanly mapped to disease, some genetic mutations are incontrovertibly damaging and lead to illness and suffering. Refusing a simple medical treatment for a disorder with a clear singular genetic root cause (of which there are fewer than one might think) would be as unethical as refusing to set a broken wrist.

But I don’t think gene therapy will be as cheap, easy, or safe as antibiotics in our lifetime—rather, my opinion is that gene therapy will be expensive, invasive, and risky (at least relative to an antibiotic pill) for the foreseeable future. I don’t expect gene therapy to become routine in the same way that oral therapies are, and so choosing not to subject your child to gene editing cannot be chalked up to negligence. (A contemporary example: Sovaldi is a drug that essentially cures Hepatitis C, but it costs $200,000 and there are other treatments—could you imagine a parent being prosecuted for refusing to pay for Sovaldi?)

Why am I so down on gene therapy?

First of all, regarding cost, the clamor surrounding the Cas9 patent dispute should give you an idea of how profitable the players in this field expect gene therapy to be. Gene therapy will always be more expensive than an oral antibiotic because the treatment requires many more steps (each of which is far costlier), is much lower throughput, and will require specialized care and oversight. For similar reasons, it will not be nearly as convenient for patients as filling a prescription. And as I’ve written elsewhere, our current early-generation gene-therapy tools and limited understanding of the link between genetics and disease means that gene therapy carries unprecedented safety risks. (For example, no currently approved therapy could cause permanent heritable genetic changes.)

These risks shouldn’t disqualify gene therapy as a possible future treatment, but they could certainly give the most informed and adventurous patient pause. In short, I believe technical limitations and cost and safety concerns will delay the debate over mandatory gene editing for decades at least. More pressing to discuss are the multitude of other ways that gene editing and GMOs affect modern life and medicine.

We’ve heard already from a few parents whose children have, or may carry, genetic disorders. This reader’s son suffers from Tourette syndrome, ADHD, and OCD, all severe:

He is a brave and strong-willed young man, and he has chosen to live and manage his issues without medication. He describes the pain, frustration and embarrassment that he lives with; he has endured chronic pain for nearly 10 years due to his severe, seizure-like tics. Tourette syndrome is an inherited disorder. Some 99 percent of males and 75 percent of females carrying the genes for TS will display symptoms. This means that my son will have to confront the possibility that his children will inherit this painful and misunderstood disorder.

He has already declared that he will not have children; he does not want to inflict what he has endured on an innocent child. That’s his decision to make, and, who knows? With the passage of time and improved treatments, perhaps he will change his mind.

But how does it feel to know that society sees you as defective, as a problem to be repaired or edited out? How does he see himself? His voice is the one you need to hear.

He writes:

I like gene editing, and I think that it should be mandatory or at least strongly encouraged when it gets functional on a wider scale.

I think that it’s unethical to allow a child to be born with disabilities when you could avoid it, since it’s basically sentencing someone to a life with chronic pain. In the same way, I believe it is wrong to deny a child a cochlear implant out of a desire for them to embrace deaf culture more. Disabilities suck.

You wouldn’t cut off someone’s leg or stab someone carefully in the brain to damage it, so why would you intentionally have a kid with no legs or a brain that doesn’t work right?

His mother adds:

My husband also told me that our son wishes that we had terminated my pregnancy with him when we were offered the option. My husband was quick to explain to him that the ultrasound anomalies have no correlation at all with Tourette syndrome—but this just breaks my heart.

He’s in a lot of pain, and I wish he would relent and investigate the current state of research on cannabidiol, which looks as if it could do him a world of good. Being in so much pain for so long must be difficult. I hope that a safe, legal remedy is available, and soon. But that’s another debate, isn’t it?

But while I as a parent would do whatever I could to cureTourette’s, I in no way see it as a disability that warrants abortion. As I’ve told him, for many years, we all have our own baggage, and many people, myself included, live full, active lives with chronic health problems and worse. I hope that he is able to recognize how strong and resilient he is.

If you are living with Tourette’s or another disability and have thoughts to contribute on the gene-editing debate, write us at hello@theatlantic.com and we’ll update this post.

Two week ago, I asked readers, “Will Editing Your Baby’s Genes Be Mandatory?” That is to say, parents are sometimes charged with crimes when religious beliefs cause them to deny their child lifesaving antibiotics, or an appendectomy, or a blood transfusion. In the future, if and when editing a baby’s genes can prevent an awful disease, the inevitable parents who reject the technology may be similarly punished.

Should that happen?

Scores of The Atlantic’s readers offered thoughtful responses that are helpful for thinking through aspects of biotechnology that will raise ethical dilemmas in future years. Their letters illustrate the diversity of viewpoints society will confront on this issue. Over the next week, I’ll be publishing a selection of correspondence, beginning with readers who have personal connections to the issue.

We begin with a cancer survivor and carrier of Lynch Syndrome, an inherited condition that increases the risk of colon cancer. Each of her children has a 50 percent chance of inheriting the mutation; neither has been tested to see if they do, in fact, carry it.

She writes:

While some may fuss and fret about the ethics of gene editing and so-called designer babies, should either of my sons carry the Lynch mutation, I would not only urge them to use gene editing for their offspring, but I would pay for it myself—as I would for IVF, the current recommendation for hereditary cancer carriers of childbearing age.

The cost of cancer and other diseases is huge—not only monetarily, for individuals and the nation, but also psychologically. Cancer is challenging for even the strongest among us, surrounded by loving care. When one adds in uncertain health insurance and the reality of life insurance discrimination, the ability to root out the cause of disease at the genetic level is not only tempting, but humane, intelligent and compassionate.

But would I force gene editing upon my sons? I would not. And do I believe those who make a different choice should be punished? Using the examples of devout Christian Scientists, I do not. Having been through cancer, I know that prayer is a useful and healthy adjunct to medical care—and if someone has different beliefs, while I may not agree, I cannot condone the state stepping in to punish them in a time of tragedy.

I can encourage my sons to make certain choices, but I can’t force them. And while I wholeheartedly support science and the work being done around gene editing, I can’t force anyone to avail themselves of these therapies—and neither should the government.

This next reader is about to attend a genetic-counseling session with her partner:

We will be finding out about the option of testing fertilized embryos and selecting “healthy” ones to implant. My partner is a carrier of a very rare genetic disorder and has bilateral hearing loss caused by this syndrome. Due to this, he is hard of hearing and uses hearing aids. He also faces the possibility of becoming profoundly deaf later in life.

While we don’t have the ability to edit genes, we could select an embryo that doesn’t have this disorder or will likely be carrier but non-symptomatic. Without this intervention, there is a possibility our child will be deaf or suffer hearing loss.

I keep typing “healthy” in quotation marks because the assumption is that I would want a hearing child ... that a deaf child or the possibility of having a deaf child is less than ideal, that being deaf is a problem, something to be managed or fixed and ultimately bad. Isn’t that what we are saying when talking about healthy babies?

Of course, I want a healthy baby. But when discussing these medical advances, more often than not, conversations begin through an ableist lens. Most articles I read are from an able-bodied perspective. These articles assume that someone with Down Syndrome would be better off without the extra chromosome. Instead of a nuanced conversation looking at how disability is (or in most cases isn’t) integrated in our society, with gene editing, we look to fix or erase disabilities instead.

While gene editing will be revolutionary for the treatment of some truly terrible diseases, we are failing those who don’t believe their disabilities need fixing. We are deciding that we want to create people who fit into our able-bodied world.

I have no idea what our decision will be.

One factor will be the severity of any potential disability and quality of life. I’ve worked with adults with developmental disabilities. I’ve seen how our society treats them at our best and worst. I’m struggling a great deal to reconcile all of this. At what point are we selecting children based on convenience and prejudice because we don’t understand the culture and beauty of experiences different than our own?

Another reader reflects on what her child has taught her about this subject:

Who wouldn’t want to ensure their children are the healthiest possible? Then there’s the slippery slope to also wanting the smartest, most athletic, prettiest, tallest, most likely to win an Olympic medal.

My daughter has won Olympic medals––Special Olympic medals, to be precise. The deletion in her genome is tiny but spectacular. It decides all parts of her life. She is the most outgoing, enthusiastic, friendly person you’ll ever meet. If, before she was born, someone had told me she would be born with a rare genetic disorder, would I have wanted it “fixed”? The problem now is that I’ve met my daughter. I wouldn’t change a thing.

But that’s now.

I didn’t choose to have prenatal testing done, other than the standard 20-week ultrasound. Cost wasn’t a factor. I just knew that I wouldn’t terminate a pregnancy based on those test results, so what was the point?

Society has always evolved to follow science and human capabilities. I imagine this will be the same. As someone who spends time with the neurologically atypical, the loss of people with disabilities in our communities is not something to cheer. Everyone has value, but we won’t know the gifts they will offer until they are actually born and live among us.

The final reader in this item reflects on faith and the rearing of children with serious medical problems:

I am the step-father of two children with cystic fibrosis. Some of my other children have asthma issues. It would be so simple to just “cut and paste” and then we wouldn’t have doctor/hospital visits all the time. But at the same time, I am reminded that the Bible says, “let us make man in our image.” Even as tarnished as that image may be, I have to believe that God has allowed illness for His glory.

I cannot fault parents for trying to seek out medical options to save their children. I watched the documentary Twice Born and wept in fascination that some babies might be able to be treated. One of my children takes more than 10 medications daily and he may not live much past 20. I consider the medicines and tools that are available to me a gift from God and have no qualms about thanking Him for them.

But at what point does medical treatment become redesigning a human being? If we can breed animals for harvest, why not genetically engineer some children so that we can harvest their limbs and organs for wealthy people that are ill?

Have you ever seen a movie called Gattaca? Interestingly enough it discusses children conceived naturally versus genetically altered children and genetic discrimination as a result of that editing. It’s something that I would consider prophetic in the same sense I consider Fahrenheit 451 to be prophetic—a frightening indicator of things to come.

What, or who, are we actually fighting with these technologies? Perhaps I should spend less time being concerned and more time praying.

Among the more practical advice that can be offered to international travelers is wisdom of the bathroom. So let me say, as someone who recently returned from China, that you should be prepared to one, carry your own toilet paper and two, practice your squat.

I do not mean those goofy chairless sits you see at the gym. No, toned glutes will not save you here. I mean the deep squat, where you plop your butt down as far as it can go while staying aloft and balanced on the heels. This position—in contrast to deep squatting on your toes as most Americans naturally attempt instead—is so stable that people in China can hold it for minutes and perhaps even hours ...

Invented centuries ago in France, the bidet has never taken off in the States. That might be changing.

“It’s been completely Americanized!” my host declares proudly. “The bidet is gone!” In my time as a travel editor, this scenario has become common when touring improvements to hotels and resorts around the world. My heart sinks when I hear it. To me, this doesn’t feel like progress, but prejudice.

Americans seem especially baffled by these basins. Even seasoned American travelers are unsure of their purpose: One globe-trotter asked me, “Why do the bathrooms in this hotel have both toilets and urinals?” And even if they understand the bidet’s function, Americans often fail to see its appeal. Attempts to popularize the bidet in the United States have failed before, but recent efforts continue—and perhaps they might even succeed in bringing this Old World device to new backsides.

Congressional Republicans and conservative pundits had the chance to signal Trump his attacks on law enforcement are unacceptable—but they sent the opposite message.

President Trump raged at his TV on Sunday morning. And yet on balance, he had a pretty good weekend. He got a measure of revenge upon the hated FBI, firing former Deputy Director Andrew McCabe two days before his pension vested. He successfully coerced his balky attorney general, Jeff Sessions, into speeding up the FBI’s processes to enable the firing before McCabe’s retirement date.

Beyond this vindictive fun for the president, he achieved something politically important. The Trump administration is offering a not very convincing story about the McCabe firing. It is insisting that the decision was taken internally by the Department of Justice, and that the president’s repeated and emphatic demands—public and private—had nothing whatsoever to do with it.

The first female speaker of the House has become the most effec­tive congressional leader of modern times—and, not coinciden­tally, the most vilified.

Last May, TheWashington Post’s James Hohmann noted “an uncovered dynamic” that helped explain the GOP’s failure to repeal Obamacare. Three current Democratic House members had opposed the Affordable Care Act when it first passed. Twelve Democratic House members represent districts that Donald Trump won. Yet none voted for repeal. The “uncovered dynamic,” Hohmann suggested, was Nancy Pelosi’s skill at keeping her party in line.

She’s been keeping it in line for more than a decade. In 2005, George W. Bush launched his second presidential term with an aggressive push to partially privatize Social Security. For nine months, Republicans demanded that Democrats admit the retirement system was in crisis and offer their own program to change it. Pelosi refused. Democratic members of Congress hosted more than 1,000 town-hall meetings to rally opposition to privatization. That fall, Republicans backed down, and Bush’s second term never recovered.

As the Trump presidency approaches a troubling tipping point, it’s time to find the right term for what’s happening to democracy.

Here is something that, even on its own, is astonishing: The president of the United States demanded the firing of the former FBI deputy director, a career civil servant, after tormenting him both publicly and privately—and it worked.

The American public still doesn’t know in any detail what Andrew McCabe, who was dismissed late Friday night, is supposed to have done. But citizens can see exactly what Donald Trump did to McCabe. And the president’s actions are corroding the independence that a healthy constitutional democracy needs in its law enforcement and intelligence apparatus.

McCabe’s firing is part of a pattern. It follows the summary removal of the previous FBI director and comes amid Trump’s repeated threats to fire the attorney general, the deputy attorney, and the special counsel who is investigating him and his associates. McCabe’s ouster unfolded against a chaotic political backdrop which includes Trump’s repeated calls for investigations of his political opponents, demands of loyalty from senior law enforcement officials, and declarations that the job of those officials is to protect him from investigation.

Although the former secretary of state’s contentious relationship with the president didn’t help matters, Tillerson’s management style left a department in disarray.

Rex Tillerson is hardly the first person to be targeted in a tweet from Donald Trump, but on Tuesday morning, he became the first Cabinet official to be fired by one. It was an ignominious end to Tillerson’s 13-month stint as secretary of state, a tenure that would have been undistinguished if it weren’t so entirely destructive.

Compared with expectations for other members of Trump’s Cabinet, the disastrous results of Tillerson’s time in office are somewhat surprising. Unlike the EPA’s Scott Pruitt, Tillerson did not have obvious antipathy for the department he headed; unlike HUD’s Ben Carson, he had professional experience that was relevant to the job; and unlike Education’s Betsy DeVos, his confirmation hearing wasn't a disaster.

How evangelicals, once culturally confident, became an anxious minority seeking political protection from the least traditionally religious president in living memory

One of the most extraordinary things about our current politics—really, one of the most extraordinary developments of recent political history—is the loyal adherence of religious conservatives to Donald Trump. The president won four-fifths of the votes of white evangelical Christians. This was a higher level of support than either Ronald Reagan or George W. Bush, an outspoken evangelical himself, ever received.

Trump’s background and beliefs could hardly be more incompatible with traditional Christian models of life and leadership. Trump’s past political stances (he once supported the right to partial-birth abortion), his character (he has bragged about sexually assaulting women), and even his language (he introduced the words pussy and shithole into presidential discourse) would more naturally lead religious conservatives toward exorcism than alliance. This is a man who has cruelly publicized his infidelities, made disturbing sexual comments about his elder daughter, and boasted about the size of his penis on the debate stage. His lawyer reportedly arranged a $130,000 payment to a porn star to dissuade her from disclosing an alleged affair. Yet religious conservatives who once blanched at PG-13 public standards now yawn at such NC-17 maneuvers. We are a long way from The Book of Virtues.

Scholars have been sounding the alarm about data-harvesting firms for nearly a decade. The latest Cambridge Analytica scandal shows it may be too late to stop them.

On Friday night, Facebook suspended the account of Cambridge Analytica, the political-data company backed by the billionaire Robert Mercer that consulted on both the Brexit and Trump campaigns.

The action came just before The Guardian and The New York Timesdropped major reports in which the whistle-blower Christopher Wylie alleged that Cambridge Analytica had used data that an academic had allegedly improperly exfiltrated from the social network. These new stories, backed by Wylie’s account and internal documents, followed years of reporting by The Guardianand The Intercept about the possible problem.

The details could seem Byzantine. Aleksandr Kogan, then a Cambridge academic, founded a company, Global Science Research, and immediately took on a major client, Strategic Communication Laboratories, which eventually gave birth to Cambridge Analytica. (Steve Bannon, an adviser to the company and a former senior adviser to Trump, reportedly picked the name.)

It’s not that they can’t consider other people’s perspectives. It’s that they don’t do so automatically.

It’s a rare person who goes out of their way to spend time with psychopaths, and a rarer one still who repeatedly calls a prison to do so. But after more than a year of meetings and negotiation, Arielle Baskin-Sommers from Yale University finally persuaded a maximum-security prison in Connecticut to let her work with their inmates, and to study those with psychopathic tendencies.

Psychopaths, by definition, have problems understanding the emotions of other people, which partly explains why they are so selfish, why they so callously disregard the welfare of others, and why they commit violent crimes at up to three times the rate of other people.

But curiously, they seem to have no difficulty in understanding what other people think, want, or believe—the skill variously known as perspective-taking, mentalizing, or theory of mind. “Their behavior seems to suggest that they don’t consider the thoughts of others,” says Baskin-Sommers, but their performance on experiments suggests otherwise. When they hear a story and are asked to explicitly say what a character is thinking, they can.

A new six-part Netflix documentary is a stunning dive into a utopian religious community in Oregon that descended into darkness.

To describe Wild Wild Country as jaw-dropping is to understate the number of times my mouth gaped while watching the series, a six-part Netflix documentary about a religious community in Oregon in the 1980s. It’s ostensibly the story of how a group led by the dynamic Bhagwan Shree Rajneesh purchased 64,000 acres of land in central Oregon in a bid to build its own utopian city. But, as the series immediately reveals, the narrative becomes darker and stranger than you might ever imagine. It’s a tale that mines the weirdness of the counterculture in the ’70s and ’80s, the age-old conflict between rural Americans and free love–preaching cityfolk, and the emotional vacuum that compels people to interpret a bearded mystic as something akin to a god.

Among the more practical advice that can be offered to international travelers is wisdom of the bathroom. So let me say, as someone who recently returned from China, that you should be prepared to one, carry your own toilet paper and two, practice your squat.

I do not mean those goofy chairless sits you see at the gym. No, toned glutes will not save you here. I mean the deep squat, where you plop your butt down as far as it can go while staying aloft and balanced on the heels. This position—in contrast to deep squatting on your toes as most Americans naturally attempt instead—is so stable that people in China can hold it for minutes and perhaps even hours ...

Invented centuries ago in France, the bidet has never taken off in the States. That might be changing.

“It’s been completely Americanized!” my host declares proudly. “The bidet is gone!” In my time as a travel editor, this scenario has become common when touring improvements to hotels and resorts around the world. My heart sinks when I hear it. To me, this doesn’t feel like progress, but prejudice.

Americans seem especially baffled by these basins. Even seasoned American travelers are unsure of their purpose: One globe-trotter asked me, “Why do the bathrooms in this hotel have both toilets and urinals?” And even if they understand the bidet’s function, Americans often fail to see its appeal. Attempts to popularize the bidet in the United States have failed before, but recent efforts continue—and perhaps they might even succeed in bringing this Old World device to new backsides.

Congressional Republicans and conservative pundits had the chance to signal Trump his attacks on law enforcement are unacceptable—but they sent the opposite message.

President Trump raged at his TV on Sunday morning. And yet on balance, he had a pretty good weekend. He got a measure of revenge upon the hated FBI, firing former Deputy Director Andrew McCabe two days before his pension vested. He successfully coerced his balky attorney general, Jeff Sessions, into speeding up the FBI’s processes to enable the firing before McCabe’s retirement date.

Beyond this vindictive fun for the president, he achieved something politically important. The Trump administration is offering a not very convincing story about the McCabe firing. It is insisting that the decision was taken internally by the Department of Justice, and that the president’s repeated and emphatic demands—public and private—had nothing whatsoever to do with it.

The first female speaker of the House has become the most effec­tive congressional leader of modern times—and, not coinciden­tally, the most vilified.

Last May, TheWashington Post’s James Hohmann noted “an uncovered dynamic” that helped explain the GOP’s failure to repeal Obamacare. Three current Democratic House members had opposed the Affordable Care Act when it first passed. Twelve Democratic House members represent districts that Donald Trump won. Yet none voted for repeal. The “uncovered dynamic,” Hohmann suggested, was Nancy Pelosi’s skill at keeping her party in line.

She’s been keeping it in line for more than a decade. In 2005, George W. Bush launched his second presidential term with an aggressive push to partially privatize Social Security. For nine months, Republicans demanded that Democrats admit the retirement system was in crisis and offer their own program to change it. Pelosi refused. Democratic members of Congress hosted more than 1,000 town-hall meetings to rally opposition to privatization. That fall, Republicans backed down, and Bush’s second term never recovered.

As the Trump presidency approaches a troubling tipping point, it’s time to find the right term for what’s happening to democracy.

Here is something that, even on its own, is astonishing: The president of the United States demanded the firing of the former FBI deputy director, a career civil servant, after tormenting him both publicly and privately—and it worked.

The American public still doesn’t know in any detail what Andrew McCabe, who was dismissed late Friday night, is supposed to have done. But citizens can see exactly what Donald Trump did to McCabe. And the president’s actions are corroding the independence that a healthy constitutional democracy needs in its law enforcement and intelligence apparatus.

McCabe’s firing is part of a pattern. It follows the summary removal of the previous FBI director and comes amid Trump’s repeated threats to fire the attorney general, the deputy attorney, and the special counsel who is investigating him and his associates. McCabe’s ouster unfolded against a chaotic political backdrop which includes Trump’s repeated calls for investigations of his political opponents, demands of loyalty from senior law enforcement officials, and declarations that the job of those officials is to protect him from investigation.

Although the former secretary of state’s contentious relationship with the president didn’t help matters, Tillerson’s management style left a department in disarray.

Rex Tillerson is hardly the first person to be targeted in a tweet from Donald Trump, but on Tuesday morning, he became the first Cabinet official to be fired by one. It was an ignominious end to Tillerson’s 13-month stint as secretary of state, a tenure that would have been undistinguished if it weren’t so entirely destructive.

Compared with expectations for other members of Trump’s Cabinet, the disastrous results of Tillerson’s time in office are somewhat surprising. Unlike the EPA’s Scott Pruitt, Tillerson did not have obvious antipathy for the department he headed; unlike HUD’s Ben Carson, he had professional experience that was relevant to the job; and unlike Education’s Betsy DeVos, his confirmation hearing wasn't a disaster.

How evangelicals, once culturally confident, became an anxious minority seeking political protection from the least traditionally religious president in living memory

One of the most extraordinary things about our current politics—really, one of the most extraordinary developments of recent political history—is the loyal adherence of religious conservatives to Donald Trump. The president won four-fifths of the votes of white evangelical Christians. This was a higher level of support than either Ronald Reagan or George W. Bush, an outspoken evangelical himself, ever received.

Trump’s background and beliefs could hardly be more incompatible with traditional Christian models of life and leadership. Trump’s past political stances (he once supported the right to partial-birth abortion), his character (he has bragged about sexually assaulting women), and even his language (he introduced the words pussy and shithole into presidential discourse) would more naturally lead religious conservatives toward exorcism than alliance. This is a man who has cruelly publicized his infidelities, made disturbing sexual comments about his elder daughter, and boasted about the size of his penis on the debate stage. His lawyer reportedly arranged a $130,000 payment to a porn star to dissuade her from disclosing an alleged affair. Yet religious conservatives who once blanched at PG-13 public standards now yawn at such NC-17 maneuvers. We are a long way from The Book of Virtues.

Scholars have been sounding the alarm about data-harvesting firms for nearly a decade. The latest Cambridge Analytica scandal shows it may be too late to stop them.

On Friday night, Facebook suspended the account of Cambridge Analytica, the political-data company backed by the billionaire Robert Mercer that consulted on both the Brexit and Trump campaigns.

The action came just before The Guardian and The New York Timesdropped major reports in which the whistle-blower Christopher Wylie alleged that Cambridge Analytica had used data that an academic had allegedly improperly exfiltrated from the social network. These new stories, backed by Wylie’s account and internal documents, followed years of reporting by The Guardianand The Intercept about the possible problem.

The details could seem Byzantine. Aleksandr Kogan, then a Cambridge academic, founded a company, Global Science Research, and immediately took on a major client, Strategic Communication Laboratories, which eventually gave birth to Cambridge Analytica. (Steve Bannon, an adviser to the company and a former senior adviser to Trump, reportedly picked the name.)

It’s not that they can’t consider other people’s perspectives. It’s that they don’t do so automatically.

It’s a rare person who goes out of their way to spend time with psychopaths, and a rarer one still who repeatedly calls a prison to do so. But after more than a year of meetings and negotiation, Arielle Baskin-Sommers from Yale University finally persuaded a maximum-security prison in Connecticut to let her work with their inmates, and to study those with psychopathic tendencies.

Psychopaths, by definition, have problems understanding the emotions of other people, which partly explains why they are so selfish, why they so callously disregard the welfare of others, and why they commit violent crimes at up to three times the rate of other people.

But curiously, they seem to have no difficulty in understanding what other people think, want, or believe—the skill variously known as perspective-taking, mentalizing, or theory of mind. “Their behavior seems to suggest that they don’t consider the thoughts of others,” says Baskin-Sommers, but their performance on experiments suggests otherwise. When they hear a story and are asked to explicitly say what a character is thinking, they can.

A new six-part Netflix documentary is a stunning dive into a utopian religious community in Oregon that descended into darkness.

To describe Wild Wild Country as jaw-dropping is to understate the number of times my mouth gaped while watching the series, a six-part Netflix documentary about a religious community in Oregon in the 1980s. It’s ostensibly the story of how a group led by the dynamic Bhagwan Shree Rajneesh purchased 64,000 acres of land in central Oregon in a bid to build its own utopian city. But, as the series immediately reveals, the narrative becomes darker and stranger than you might ever imagine. It’s a tale that mines the weirdness of the counterculture in the ’70s and ’80s, the age-old conflict between rural Americans and free love–preaching cityfolk, and the emotional vacuum that compels people to interpret a bearded mystic as something akin to a god.